Barb Wilkie's EHN Website
Last updated 2008

High Blood Pressure

High blood pressure can damage the small blood vessels in the kidneys. The damaged vessels cannot filter wastes from the blood as they are supposed to. A doctor may prescribe blood pressure medication. ACE inhibitors and ARBs have been found to protect the kidneys even more than other medicines that lower blood pressure to similar levels. The National Heart, Lung, and Blood Institute (NHLBI), one of the National Institutes of Health, recommends that people with diabetes or reduced kidney function keep their blood pressure below 130/80. http://kidney.niddk.nih.gov/kudiseases/pubs/yourkidneys/
Barb's point: No one seems to give a rat's backside as to what can cause high blood pressure. IF they looked for cause, they'd certainly remove all fragrances from all health care settings for a start. Why add a burden to a body with the various toxins found in modern artificially scented products? The neurotoxins found in fragrances can and do affect the autonomic nervous system and that can affect the cardiovascular system. Hence, some of the chemically injured I know suffer from a dramatic drop in blood pressure, which is harmful to their health, while others of us find a dramatic jump in blood pressure, which is shown to be harmful to our health.

About life in 2005 . . .

Introduction

That I want to live while dying is the very thought that sent me on this particular odyssey. Of course, part and parcel of my life at the time of kidney failure diagnosis was the fact that I was already seeing an acupuncturist in Marin County and another in Berkeley. I had been shared by the two, for I not only lived with Multiple Chemical Sensitivity, but then diagnosed with ovarian cancer in May 1998. As it turns out, I was incorrectly diagnosed, based upon sonograms, proving to myself that yes, even pictures can lie.

Fall 2009 Update: It has been over a year since I've had a serious sinus infection, so it appears that the laser cured latent sinus problems. IF so, that was a cure that was easy to endure . . . and which time has now proved to me to have been very effective.

Although I've yet to meet a nephrologist who has studied petrochemically derived flavors, fragrances, pesticides, building materials and furnishings, I'm hopeful that one day, someone, somewhere, will think: Ah Ha! Flavors and Fragrances. These products contain chemicals that are known kidney toxicants! Then maybe we'll get somewhere in understanding why there is such a burgeoning number of patients with renal disease and renal failure. To not look at the role superfluous toxins in flavors and fragrances play doesn't mean they don't play a significant role in kidney disease.

Note: Of some interest to me, and I hope to you, too, this FDA page has changed since Betty Bridges and I, under the auspices of EHN, filed a petition with the FDA regarding the FDA's lack of warning on fragrance products released to market without full substantiation of safety.
Heavens, there had been no research on the effects of fragrances via inhalation. Inhaling is something we all must do, regardless of any underlying conditions and second-hand scent is simply deleterious for millions of people. So how can flavors and fragrances (used interchangeably by the industry) be released to market without the FDA warning and without full substantiation for safety? And a further question is: How can the industry get by with stating that it is "Providing the public with safe and wholesome fragrances and fragrance ingredients"? What about those concoctions of toxins can possibly be "SAFE" or "WHOLESOME"? By what standard? There certainly isn't one set by the FDA or any other government agency charged with protecting public health. http://www.fmafragrance.org/

Update August 2009 . . .
I again went into the FMA site and lo and behold, that phrase that has irritated the livin' hell outta me over the years is finally off their website. It had been at the very top of their home page to greet one and all with that lie. I wonder who finally got to them to say: Whoa! What do you mean stating you are "Providing the public with safe and wholesome fragrances and fragrance ingredients? "YOU haven't done the appropriate testing and haven't been listening to the public who have been made so seriously ill . . . and you haven't paid attention to those who have paid the ultimate price: PREMATURE DEATH! As I've written to many government agencies, charged with protecting public health, about that -- what I see as -- fraudulent line, I can only wonder, Which agency finally had an effect upon FMAFragrances.com? I'll never know. Nor will I know how many other people complained about the same line.
These days you can check into the FMA site to learn their view of how safe their products are. To me, they are not listening to the voices of the people who have been trying to tell them just how unsafe fragrances are based on their own body's serious reactions to breathing those volatile toxins on the ambient air. I haven't seen serious tests for effects upon inhalation, nor for systemic effects. I've yet to learn of tests looking at the effects of fetal development in pregnant women who insist upon using their highly scented products. What I do see is an industry lobbying force geared for battle . . . and with the dollars behind them.

But, sadly, for too many people, most mainstream western medical doctors do not/will not recognize MCS. While doctors can and do recognize renal failure, thanks to blood tests, one finds that they do not/will not acknowledge that chemicals can cause it. I can only hope that changes in my lifetime. I'd like to be around to see such a change in paradigm by the medical industry and its doctors.

The following is not the expressed viewpoint of any other person, living or dead. It is strictly my own. It's all about me.

I would hope doctors could care for patients without resorting to fear mongering tactics, but so far, that has been my nephrological experience. Despite the death threats and fear mongering laid upon me, I'm thankful that I practiced thinking for myself. And I am thankful my parents believed in chiropractic; indeed my dad was a chiropractor; a Palmer Pioneer.

Thus far, I've lived a very full, healthful life with worsening kidney disease. I remain asymptomatic and there's that little kernal of something in me that keeps asking: What IF I support kidney health to the extent possible rather than further poisoning the kidneys with drugs, will they eventually show the tiniest bit of improvement?

As I've said, I am my own case study.

Admittedly, I'm not even a very good case study because I do too many different things at one time and therefore cannot say for sure that any one thing has really worked at keeping me thriving (to borrow Kaiser's word).

Visits with nephrologists and then some

I'm hoping to keep the following true stories in somewhat of a chronological order. -- barb

First (Kaiser, Oakland) . . .July 2005
Second (Kaiser, Santa Rosa) . . . April 2006
Third (Kaiser, Oakland) . . .June 2006
Fourth (UCSF, San Francisco) . . . September 2006

I'm posting my information here because, in the first place, there is precious little research available on kidney -- renal -- disease being treated without drugs. At least, I've found zero, zip, nada. None. So, for people living with the effects of chemical injury, who cannot take pharmaceuticals, there is a horrendous dearth of information. Feel free to learn with me as I try to dodge or delay mainstream medicine's pharmaceutical, dialysis and transplantation approaches. Follow along with me on my new journey: This is empirical evidence (observation and experiences), if you please.

The kidney news hit me like a bomb in mid-July 2005, when I learned through a routine blood test, and repeated tests, plus sonogram, that I was into Stage 4 kidney disease. I had just celebrated my 67th birthday with my entire family and then I had the routine blood test that proved to be anything but routine.

Kidney size matters . . .

My info will be in chronological order, so the latest info will be below. You can jump to the latest numbers if you've been all through this before.

ARF. Accute Renal Failure. Or in my case, diagnosed as: "accute on chronic renal failure."
CRF. Chronic Renal Failure.

 

So, despite how great I feel -- and 2005 dawned with me feeling better MCS-wise than I had in 20 - 30 years! -- I do heed the advice to seriously limit foods rich in protein, potassium, magnesium, phosphorous and sodium.

What I couldn't take seriously was the two-paged food list from Kaiser, via a well-known lab. The problem with the food suggestions given me by a Kaiser nephrologist is that I couldn't and wouldn't eat half that junk in the past. It listed too many mainstream items that were too heavy on the petrochemical-derived flavors, dyes and sweets.

Also, Kaiser recommended eight ounces of meat a day, which, I've come to learn by other standards, is too much. Way too much. By year's end, I began following Mackenzie Walser's plan that strictly restricts meat protein and supplemented my diet with amino acids, as suggested.

As it was, the visit got off to a hellacious start. The waiting room of Nephrology/Pulmonary (Kaiser Oakland) was loaded with heavy perfume. Naturally, I wore my respirator. The nurse (or medical assistant), while taking me back to the exam room, said as if explaining to an unaware child: "You don't have an appointment in Pulmonary -- that's your lungs -- you have an appointment in Nephrology -- that's your kidneys." She about dripped with saccharine while being supercilious.

"Who cooks FOR ME????? I cook!," I replied incredulously, first parrying his inane question by repeating his question.

And then there were a few more ridiculous questions . . . especially preposterous since he's already claimed to know AAALLLLLLLL about me. Oh, boy, was I in for a ride and a half. And, it only got worse in so many ways.

He also did a mental number on me, stressing the fact that I was a sick puppy, scheduled to be dead or dying in a year -- the date, July 26, 2006 -- if not on dialysis or getting a kidney transplant, which takes years so they counsel you to go through all the hoops and over all the barrels to get on the list so you can get a transplant 6 or so years down the line.

Yeah, at my advanced age. Sure. And with me already living with the effects of chemical injury. I cannot take drugs. Drugs are petrochemically derived. Fragrances and pesticides used with gay abandon by others in my former workplace stole my health from me. And now, I've been diagnosed with stage four kidney failure. How can I even consider a transplant? Let alone the surgery for dialysis? Let alone the drugs they want to foist upon me because that's the only way they know to treat kidney patients?

Anyway, the date I was to be on dialysis or dead sticks so well because it is the birthday of one of our grandchildren. The fact that my creatinine level had dropped 12.5 percent in two days without my doing anything about it, other than the re-test, meant nothing to him. And, to give him his due -- and maybe due to the fact that I was poisoned more by pesticides and fragrances, etc. -- it has proven true that that 12.5 percent drop did ultimately mean nothing.

I guess the capper of that whole session was when he said, I'd "Check out" in a year.

Of course, he could have been proved correct. But, what a delivery system for news like death! Death in a year, or at best, life with feeling extremely sick and having to go on diaylysis and drugs, just to remain alive. That is living? I don't think so. But, we'll see.

I had not ever had to deal with depression. I assure you, I found the depths of depression thanks to that particular office visit. Of course, for my body, there was no chance that I could take a magic pill and feel better.

Call me in denial if you wish, but I know all too well that for years the mainstream medical doctors claimed that brains, hearts, livers, nerves didn't heal. And then, goodness gracious, me oh my, there were cases of those organs healing. Well, maybe, my kidneys can heal if I don't load them up with the pharmaceutical industry's petrochemical-derived products. Has anyone tried a non-drug and non-dialysis approach? Has anyone tried to heal kidneys? Or, if not heal, how about sustain life at the current level of function?

I do keep in mind that it isn't just my creatinine readings that are high, but also the BUN. It has bounced around a bit: 27, 26 and as low as 21, back in August 2005, which was one point above high normal. What is good news in all of this is that Phosphorus and Potassium are now in the "normal" range and have been since August. They were out of whack last July, along with the creatinine and BUN readings, but simple attention to diet brought them in order. I hope I can stick to a strict diet and stave off death and dialysis for a little while longer then is predicted.

In July 2005, I had been eating up yogurts (dairy is high in phosphorous) not eaten by the grandkids for the gathering of the clan. I usually avoid dairy because of my uterine and pedunculated tumors. Also, I'd been eating lots and lots of melons, tomatoes and potatoes (high in potassium). I have always known that banannas contained lots of potassium, and ate them because of that, plus I liked them. But I quickly learned that avocados, artichokes, spinach, tomatoes, potatoes, celery, melons, and so much more "good food" also contain high quantities of potassium and magnesium, and therefore are on the renal patient's NO-NO list.

You can only imagine the rest, when I went on to mention the assault of the perfume and fragrance products, plus pesticides.

GET THE FACT THAT THE PLETHORA OF PERFUMED PRODUCTS HAS POISONED OUR AIR, OUR BODIES, OUR LAND AND OUR WATER! OUR KIDNEYS.

GET IT that synthetic scents can adversely affect the cardiovascular system!

GET IT that petrochemical-derived fragrances can poison various other body organs, like the skin, lungs, liver, kidneys, also the nervous systems and brain!

GET IT that products containing petrochemical-derived fragrances poison people who are only secondhand users!

GET IT that kidneys process toxins, including those toxins (flavors and fragrances) sold without full substantiation of safety, and without a hint of warning by the FDA

GET IT that having a scented healthcare facility is only making patients sick . . . and those already chemically injured are put in further jeopardy and on a race course to premature death. Health care WITH harm! Hippocratic Oath or is it the Oath of the Hypocrite? Of course, most doctors do not fall into the later category. Alas, some do. Caveat Emptor!

GET IT that whether mainstream western medical doctors are adequately trained to diagnose the symptoms of chemical injury or not, chemical injury is REAL and petrochemical-derived fragrances KILL.

 

The exceptions from this list of symptoms, is that fragrance poisoning, be it perfumes or fabric softeners or other fragranced products, can and do cause my tumor to throb.

The list of renal failure symptoms given on RenalInfo is:

• A metallic or other foreign taste in your mouth
• Tiredness
• Feeling cold
• Headaches
• High blood pressure
• Insomnia
• Itching and dryness of the skin
• Loss of appetite or nausea
• Pain in the small of the back in the area of the kidneys
• Poor concentration, confusion, forgetfulness
• Poor sex drive
• Restless or cramped legs
• Shortness of breath
• Swelling in the hands, feet, or face, especially around the eyes, when you just wake up)
• Urination problems, such as foamy or bloody urine, more or less urine than usual, or a change in how often you urinate

Off of stinging nettles and other herbs for now, but still taking Rehmannia and Co-Q10 and other stuff. I hope to build a list of supplements to link to, so folks can follow that, as well. And, before blood tests, I'm also taking calcium. In a further effort to curb an acid stomach, I'm occasionally drinking 1/2 tsp of baking soda in 1/2 cup of water AND staying away from highly acidic foods. Hard to avoid my beloved Pub-style pickled onions, though.

Of course, I'm thankful that my routine labs plus Internist and GYN visits are covered by Kaiser/Medicare, but I'm less than pleased that I'm on my own when it comes to safer, drug-free health care. I cannot get safer care through Kaiser and certainly NOT through Medicare -- which seems to me to be far more interested in pushing the drugs and treatments that cause more harm, than in drug-free, safer, alternative treatment and PREVENTION. For example: Why doesn't Kaiser/Medicare (at my local level) offer hyperbaric oxygen therapy . . . and for that matter, thermography instead of just more radiation through mammograms? But that's another health issue.

Just think, the tests I've had done within this past year, the very ones proving that I do not have allergies are all out-of-pocket expenses for me. Medicare didn't cover a one. And, to think, for all these years I've stated: I DO NOT HAVE ALLERGIES!, I have been chemically injured! Well, I'm down a bunch of bucks now, but I've got results to prove that, son of a gun, I do know my own body!!!!! Well, at least regarding that aspect. It's good to know I'm remarkably free of allergies and that all I have to contend with is chemical injury. Now, what to do about the kidneys????

I have said down through the years and I'll say it again, When the lid blows off the flavors and fragrance industry, it will make the tobacco industry look like small potatoes. Will I live long enough to see my words ring true?

Of course, there are research dollars needed to PROVE what we all know to be fact. Not just from our own lives, but from research done by others in Europe and Japan, as well as by some brave souls in the USA. But so far, research takes money and the flavors and fragrance industry has a very strong lobby, and the mainstream media certainly will not inform the public fully because their advertising coffers are filled by the flavor and fragrance industry's advertising dollars. Add to that, the burgeoning drug industry, what with all the products to help people feel better while the flavors and fragrances industry continues unabated to release superfluous toxins to market without so much as an FDA-supposedly required warning . . . and . . . Well, you figure it out. Money talks; they cannot hear the already chemically injured over the ca-ching, ca-ching of the industry's profits.

In the meantime, kidney disease is one of those many chronic diseases with soaring rates, leading to premature death, which our experts simply claim to be "unexplained." Please try looking under your collective noses at ubiquitous petrochemically derived fragrances flavors and pesticides. Start a database of illnesses, with this question asked: Do you use products with "fragrance" on the label? For personal care, as well as cleaning and maintenance projects, and including disinfectants and pesticides, and of course, air "fresheners" and fabric softeners. Are the products you use claiming to be "unscented" but actually contain "fragrance"? Until such time as products are truly proved safe before marketing, BUYER BEWARE! Caveat Emptor!

So the bottom line is: People exposed to the petrochemically derived flavors and fragrances get sick. Yet, try your best to get a nephrologist to understand that fragrances (and their evil twin, flavors) contain chemicals that are known kidney toxicants! Known KIDNEY TOXICANTS! But the industry's bottom line is quite healthy, as is the bottom line of the pharmaceutical/mainstream medical industries, which, of course, benefit greatly AT FIRST, from folks getting sick on products containing petrochemically derived flavors and fragrances. However, there are plenty of folks who like me, after awhile, cannot take drugs without sufering serious adverse events. Some 100,000 a year die in hospital from doctor-prescribed drugs, proving that some adverse events are far more serious than others.

Fragrance use in school means education and health is hampered for students; if the sickened are teachers or other school personnel, their careers are adversely affected, as is their health. For those in the healthcare industry, or a law offices, or in government agencies, well, they can have their health stripped and their working lives made miserable for them, and it is not considered discrimination, nor harassment. Those who are newly employed, can be fired at whim. It becomes a vicious cycle. And yet, it doesn't have to happen at all. Just keep petrochemically derived fragrances out of all public areas. Especially, healthcare facilities and retirement residences, schools and workplaces. There ARE safer alternatives to use. It IS all about breathing. It IS about ACCESS. Remember: We ALL are stakeholders when it comes to breathing!

I'll keep you posted as long as I'm around and able. Watch this space.
[Above written January 2006, from notes and memory.] -- barb wilkie

February 2006

But, life goes on and on for me now. That means a new test for me, one that has me puzzled. I'm flumoxed by the fact that my creatinine clearance through a 24-hour urine catch is normal, while creatinine is steadily climbing in the blood serum analyses. I still feel great kidneywise, and still enjoy life to the extent possible considering my body is constantly poisoned by perfumes and fragrances used by others -- including staff, patients and visitors at Kaiser. Kaiser Oakland has proclaimed to me that it is "fragrance sensitive." I wrote back that they were fragrance sensitizing, pointing out the obvious difference. I never heard back.

IF you have a management team that doesn't believe in cleaner air for all, and doesn't put cleaner air regulations and policies into place, please consider leaving. I suggest you leave before your body becomes as thoroughly poisoned as mine by those superfluous chemicals such as fragrance products, pesticides, new carpets, constant paint jobs, etc. Of course, finding a job in a workplace with safer air is difficult, and especially if you are an older worker. But if possible, don't try to educate those around you as I had, for you will only be making your own condition worse and no one GETS IT until they too learn for themselves just what chemical injury is. That's when they GET IT. Then, it is too late for them, too. My dad used to like the axiom: Too soon oldt und too late schmart! (You can tell I grew up in south St. Louis in the old days.)

For years I've been reminding people of the adage, An ounce of prevention is worth a pound of cure. Now some cities, like San Francisco, invoke the Precautionary Principle.

You never get truth in advertising, for if there were truth, you'd learn of the harmful chemicals you are welcoming into your body and the bodies of your offspring, from womb on. Instead of various fragrances being advertized as if they were just squeezed flower petals and citrus fruit, you'd be told they were cleverly crafted -- derived -- from petrochemicals. And you'd be given the list of chemicals used to make that particular scent. Honest to God, I was told by an FDA agent that there's no room on those little bottles for that kind of information. I left him speechless when I suggested, that like drugs, fragrances and flavors could carry a special slip of paper, upon which all that info -- PLUS THEIR ADVERSE EVENTS! -- is made available to the public. WE HAVE A RIGHT TO KNOW!

Please check out:
RIFM RESPIRATORY SAFETY PROGRAM
"Fragrance products ... cannot clean the air. "
http://www.rifm.org/WHITE%20PAPER%20IAQ%20DIsola%20v2%2004082004.htm

April 6, 2006: Introducing NHI

October 2008 Update: I've become a star boarder at NHI. If you'd like to read about my visits there, you can go to their Blog section for October 2008 and scroll down a bit. As you read the little piece please note there is some poetic license taken. For example, it is stated that I was given two months to live . . . actually from diagnosis, I was given a year, but by the time I started at NHI, I was down to my last three months to live . . . according to the first nephrologist.
The full/true story is here; you are reading it now on this page. To see the story on NHI: go to http://www.nhimassageblog.com/2008/10/ and then scroll down a little until you reach: Massage and Kidney Failure by Joe Bob Smith.

"Unfortunate woman with a very non-mechanistic view of the cosmos who ascribes her progressive kidney disease to chemical sensitivities."

"She's certain she can correlate the fluctuations in her BP and kidney function to her level of exposure; e.g., whether things in her home have been adequately 'outgassed' before her exposure, or whether there are miniscule vapors from scents in her microenvironment. Such vapors make Richmond and Oakland 'toxic' to her, but Emeryville is OK(!)"

The doctor in Santa Rosa had mentioned a Kaiser facility in Emeryville. Emeryville???? "Emeryville is OK???" I queried him on Emeryville, for I had never heard of a Kaiser facility in Emeryville. How could I say Emeryville would be OK if I'd never found one, and therefore not been in a Kaiser there?

"She says she WOULD consider peritoneal dialysis if she loses what's left of her kidney function (she insits the only other nephrologist she saw (in the toxic Oakland environment that made the visit a grave threat to her), told her she'd die by July 26, 2005 [SIC] (she's certain of that date)." Let me add a major "sic" to that entire paragraph. (See next paragraph.) -- barb

"Patient is at risk of progression to ESRD in 1 year." [ESDR = End Stage Renal Disease]

RE: Number two's comment: "... told her she'd die by July 26, 2005[sic] (she's certain of that date)." Hell yes, I'm certain of that date, for remember, there was that line about my CHECKing OUT, with the subsequent: "You do know what I mean by Check OUT? Don't you?" How could I ever forget that????

What else could account for my kidney failure? I haven't taken OTCs or pharmaceuticals for years -- a decade at least, because of my MCS and too many adverse health events from the prescribed drugs back in the early 90s when I did try the pharmaceutical route (as do most folks with MCS). Alas, I learned the hard way that drugs and my body don't mix. But if my body doesn't process petrochemical-derived flavors, fragrances, pesticides, building materials, etc. . . . then I'm left to wonder: Why should I expect my body to properly process OTC and prescribed drugs?

And there folks, lies the reason why people with MCS are denigrated. Stultified. We cannot play the medical/ pharmaceutical industry's game. No money to be made off of us! No treatment for us! Too often it's just plenty of thwarting. Of course, there are medical doctors who are the exception to this rule, but by all accounts I've read -- and a few I've experienced -- those doctors are too rare. Far too rare.

But I digress, so to get back in the groove: I don't have HIV. I don't have diabetes. My blood pressure is often in the normal range when I'm at home, although it will spike when I've encountered a fragrance assault. I have been overweight, but no one who knows me would ever have called me obese. Certainly not my alternative care doctors.

Yet, "hypertensive" and "obese" is how Kaiser labels me. And once they came up with those labels -- without ever admitting that chemical poisoning has some bearing upon my health -- it is merely a matter of my having kidney disease. Who knows why? . . . Who cares why?

As I see it, my kidney disease is diagnosis by red herring! How's that? Because, the underlying cause is chemical injury and now that they can label me with renal failure, they just concentrate on that and what they know for treating that to just keep one functioning. They say that healing is IMPOSSIBLE. Maybe so, but with their regime, they don't even give the body a chance to handle failing kidneys. They take over.

MCS: I say, I had UNEXPECTED weight gain as I came down with more and more severe MCS symptoms. Was my body trying to protect itself with added fat cells in which to store toxins? Of course, when diagnosed with the tumor, at first thought of as an ovarian mass, the truth about my benign tumor is that I had been at that weight for years and years -- for the length of time I was working in a perfume and pesticide- poisoned atmosphere. But the tumor didn't develop until I was ostracized to an even more toxic office, which I quickly dubbed TWDTC (pronounced Twid Tick and standing for Toxic Waste Dump Torture Chamber. You might guess I worked for a gov't agency where acronyms rule. Making up my own, helped me in some mysterious way.)

Interestingly, the tumor developed in rather short order -- within six months of my having been moved to that more toxic office, which now added diesel exhaust and tobacco smoke to the usual toxic mix of fragrances and pesticides. The exhaust and smoke and, of course, fragrances on the people who were using them to try to hide the smell of the smoke that permeated their bodies, all came in through "sealed windows." As did the smell of incoming rain. However, I could never get the agency to add extra sealant around those sealed windows, so I got it all from the trucks that delivered and kept their engines running, the blood mobile that kept its engine running, the buses that loaded and unloaded passengers, all the passing traffic, PLUS the smokers who'd stand right outside those windows to puff away and further pollute my air with their fragrances to boot. Am I surprised I developed a benign tumor to top off my MCS? Nope. Did my workplace management team see me as a chronic complainer, not someone summarily dismissed and further poisoned? Yep! Did they eventually decide to move me back to the third floor into a closet that was not properly vented and furthermore had a copier vented into the air space above the suspended ceilings? Yep. Did I then decide to make like a banana and split that scene? YEP! By that time I could take early retirement and I did. That was October 1998.

Now for one of my life's ironies: My most likely fragrance encounters these days are at Kaiser. All of my other healthcare, including dental, is most often FREE of petrochemical-derived fragrances. And, the rest of my life is pretty well guarded against flagrant fragrant assaults, except for the occasions of neighborhood pollution by fabric softeners. And then, periodic requests of nearby apartment dwellers to not use the air and water polluting fabric softeners, clears the air for a time. Because people still use scented detergents and fabric softeners, we do our best to limit my exposures by taking our walks by the Bay and in the woods -- my mask always at the ready for that scented walker or runner, who has yet to learn that even the fragrance industry states that one should NOT be smelled beyond one's arm length (never mind the fact that too many health care encounters brings one much closer than "an arm's length").

I sure hope that Kaiser facilities start to "GET IT" regarding petrochemical derived fragrances, because as it is, it is harder for me to dodge fragrances at my healthcare facility than anywhere else I go. I find it particularly annoying for those doctors to tell me over and over that my high blood pressure causes my kidney failure and they will not accept the fact that fragrances affect the autonomic nervous system, hence the cardiovascular system. The nephrologists cannot -- or will not -- see that high blood pressure can be caused by the fragrance products they use, as well as by fragranced staff and patients. Education of staff and patients could change that, starting with the industry's acknowledgement that fragrances cannot clean and the Department of the Interior's statement that GREEN cleaning products "Must not contain petrochemical derived fragrances." Kaiser and other healthcare facilities could also use the information from NIEHS, which informs that fragrances and pesticides are "Common Indoor Air Pollutants."

To check the veracity of my comments, please see (for starters):

RIFM RESPIRATORY SAFETY PROGRAM
INDOOR AIR QUALITY
[Fragrances] cannot clean the air"
. . . nor anything else. But, fragrances do pollute. -- bw
http://www.rifm.org/WHITE%20PAPER%20IAQ%20DIsola%20v2%2004082004.htm Or at http://www.rifm.org/news/indnews_detail.asp?id+10
DOI:
"Must not contain petrochemical-derived fragrances."
http://www.doi.gov/greening/sustain/trad.html
NIEHS: available through The Wayback Machine
http://web.archive.org/web/20070810012224/http://www.niehs.nih.gov/external/faq/indoor.htm
Note: Am checking with NIEHS for a new version; 4/5/09.)

 

"I told her that PD would involve permanent placement of a plastic tube in her abdoment.[sic] She didn't balk at the notion of plastic (!) tube."

I KNOW I have kidney disease, which doctors label, "failure." I just want to know WHY. I also would really, really like to know if there are proven ways of slowing it down, maybe even healing a little, that don't involve steroids and other commonly prescribed drugs that can cause health adverse events even in those without chemical injury.

And regarding that WHY, I ask, I'd like to know something beyond their standard responses: OBESITY and HIGH BLOOD PRESSURE. There are plenty of doctors who have truly obese patients with and without high blood pressure, who do not have kidney failure. There's got to be something more than that. Also, if one really, truly had looked at me, they'd have seen someone who was overweight, but not obese and they'd have seen that at home, away from fragrance poisoning, my BP did not run terribly high. That is, not until kidney disease got well underway. Now, it's true that I have to battle high blood pressure because my kidneys fail to send out the hormone to control blood pressure, just like they fail to send out erythropoietin to help me build red blood cells. It's all part of kidney disease. But, these days, I am not overweight, let alone "OBESE," and I can still get my BP down somewhat as long as I'm not breathing in someone's perfumed products or other chemicals.

• Nephrotoxicity of 4-cycloocten-1-carbaldehyde. Arch Toxicol. Ý2004; 78(12):716-22Ý(ISSN: 0340-5761) MessingerÝH; KleberÝM; AulmannÝW Cognis Deutschland GmbH & Co. KG, Henkelstrasse 67, 40551 D¸sseldorf, Germany. Horst.Messinger@cognis.com "Natural and synthetic chemicals are often used in the fragrance industry. A toxicological profile of the synthetic fragrance booster, 4-cycloocten-1-carbaldehyde, was generated using a test program including the following methods: acute oral toxicity, acute dermal toxicity, acute skin and eye irritation, skin sensitization, subchronic toxicity, and mutagenicity. The substance was strongly irritating to the skin but only weakly irritating to the eye. It gave a clear indication of having skin-sensitizing properties. Based on the comprehensive data from a mutagenicity test battery, 4-cycloocten-1-carbaldehyde was assessed to be nonmutagenic. Although its acute toxicological profile shows no toxicity after oral or dermal application, 4-cycloocten-1-carbaldehyde displays a complex toxicological response after repeated dosing over 13 weeks. 4-Cycloocten-1-carbaldehyde or its metabolites show clear nephrotoxic properties focusing on tubular cells of the kidney. In view of these data no no-effect level can be derived from this study with 4-cycloocten-1-carbaldehyde. A broad interaction of the test substance with various tissue types and cell parameters together with severe and irreversible organic defects even at low doses leads to the conclusion that 4-cycloocten-1-carbaldehyde is unsuitable for the intended use in industrial fragrance formulations. "[Emphasis added.] http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=15365690&dopt=Abstract

   

• Effects of chiral fragrances on human autonomic nervous system parameters and self-evaluation. Chem Senses. 2001; 26(3):281-92 (ISSN: 0379-864X) Heuberger E; Hongratanaworakit T; B–hm C; Weber R; Buchbauer G Institute of Pharmaceutical Chemistry, Center of Pharmacy, University of Vienna, Althanstrasse 14, A-1090 Vienna, Austria. "The effects of chiral fragrances (enantiomers of limonene and carvone) on the human autonomic nervous system (ANS) and on self-evaluation were studied in 20 healthy volunteers. Each fragrance was administered to each subject by inhalation using an A-A-B design. Individuals were tested in four separate sessions; in one session one fragrance was administered. ANS parameters recorded were skin temperature, skin conductance, breathing rate, pulse rate, blood oxygen saturation and systolic as well as diastolic blood pressure. Subjective experience was assessed in terms of mood, calmness and alertness on visual analog scales. In addition, fragrances were rated in terms of pleasantness, intensity and stimulating property. Inhalation of (+)-limonene led to increased systolic blood pressure, subjective alertness and restlessness. Inhalation of (-)-limonene caused an increase in systolic blood pressure but had no effects on psychological parameters. Inhalation of (-)-carvone caused increases in pulse rate, diastolic blood pressure and subjective restlessness. After inhalation of (+)-carvone increased levels of systolic as well as diastolic blood pressure were observed. Correlational analyses revealed that changes in both ANS parameters and self-evaluation were in part related to subjective evaluation of the odor and suggest that both pharmacological and psychological mechanisms are involved in the observed effects. In conclusion, the present study indicates that: (i) prolonged inhalation of fragrances influences ANS parameters as well as mental and emotional conditions; (ii) effects of fragrances are in part based on subjective evaluation of odor; (iii) chirality of odor molecules seems to be a central factor with respect to the biological activity of fragrances. Remember, this study was of HEALTHY volunteers, not people already chemically injured from age five due to the effects of a refinery release and DDT mosquito abatement programs. -- barb http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11287388&dopt=Abstract

   

But it is not just kidney patients that I'm concerned about. While healthcare facilities and doctors should be concerned about the health of the still healthy, they must direct their full attention -- beyond industry hype -- to the welfare of pulmonary patients, cardiovascular patients, cancer patients, pregnant women, newborn babies, infants and children, patients with neurological symptoms, MCS patients -- the ones with the disability that cannot say its name out loud. They must consider PATIENTS. Patients over the petrochemical industries. Start supporting safer alternatives . . .

Why should any of us have to endure exposures to nonessential chemical compounds that can -- and do -- spike blood pressure, all in the name of health care? So you gather, this other Kaiser facility, the one touted as fragrance-free, was also scented. They had scented restrooms, scented patients. They also had scented hand cleaner right in the room, and a slightly scented nurse to take my blood pressure. Was she scented on her own, or because of the hand cleanser?

I should have been more alert, but I wasn't. My bad. So an even worse assault was a thermometer that was stuck in my mouth that had to have been in some God-awful disinfectant. When I protested, the nurse was either in total denial about the disinfectant in its case or in total ignorance about it. Regardless, my mouth went into an immediate adverse reaction to that stuff. My immediate turn to the sink and constant flushing of my burning mouth only further set me apart from a "normal" patient.

So there you've got the setting into which the doctor walks . . . along with a case worker who was quiet the entire time. My husband and I felt she was there more for the doctor as a witness than for me, the patient. Indeed, she wrote up the documentation of the visit that started out with "Unfortunate woman."

And to think, I've never seen myself as UNFORTUNATE, not even living and trying to work with MCS. Not when diagnosed with a possible ovarian tumor, which fortunately turned out to be a benign pedunculated tumor. Not even when diagnosed with "acute on chronic renal failure" last July.

What I do see as UNFORTUNATE, are all the patients who are put in harm's way by doctors who don't look outside of their own medical training box. And, I'd say with stats like 100,000 killed by prescribed drugs in hospital in a given year, and with "UNEXPLAINED" soaring rates of various diseases, life-threatening or just damned annoying to live with, I'd say doctors better start looking outside their medical boxes for REAL answers to REAL questions.

In all honesty, I have refused the concept of a biopsy. If I can avoid hospitalization and surgical procedures, that's my choice. IF they found I had the "typical lesions of nephrosclerosis, an unexpected glomerulonephritis, or even an 'allergic' interstitial nephritis," their treatment would be steroids. And I'd be back where I began with steroids failing me miserably during accute lung failure due to fragrance exposures in the workplace. There has got to be a safer way to treat other than steroids and that's all I'm asking about. But, I was told that as he's been trained to give drugs, that's all the information he can give to me. The problem is, IF I eventually choose to use peritoneal dialysis to extend my life, I'll have to have a nephrologist. But, good heavens, in the meantime, I do not want drugs to hasten my trip into that decision-making time. This doctor just loosely stated that I'd have about a year . . . Well, now, that's a year from April 2006, which "buys" me a little time.

And while my little saga was unfolding w/Kaiser Santa Rosa, reportedly, Kaiser employees were attending the Clean Med 2006 conference in Seattle. And there, they all were supposed to have received a page that is titled, Fragrances in Health Care. And near the end of that page, it states:

Indoor air quality can be greatly improved in health care facilities by adopting a hospital-wide fragrance-free policy that includes a fragrance-free policy for employees, maintenance products and non-employee hospital occupants. For additional information see: http://www.noharm.org or http://www.fpinva.org (Yeppers, our friend and EHN Advisory Board member Betty Bridges, RN, and also background was EHN's barb wilkie. Hey, that's me. See the fruits of our efforts at background on Health Care Without Harm's efforts on Fragrances, Pesticides and Cleaners http://www.noharm.org/us/pesticidesCleaners/issue.)

I've said it before and I'll say it again: We ALL are stakeholders when it comes to breathing.
-- barb wilkie 4/06

April 4, 2006

They are concerned because my hemoglobin is 10.1. My anemia is a real concern to the doctors. I do not want to risk my health nor my life by being forced to take Procrit. Yes, I know I could get it in a flash if I said, YES. However, I prefer saying NO to artificially contrived drugs. I've found my health is better despite blood test numbers, if I don't load up on drugs. My life. My choice. Fortunately, other than creatinine and BUN readings, my highs and lows are generally only a little high or a little low. But the kidney test via the blood seems to be unforgiving. Now, why is it that the creatinine is in the "normal range: in the 24-hour urine catch, and yet runs so high in the blood tests? On the other hand, and not to be falsely encouraged by the good news of the 24-hour catch, Dr. Walser writes that "Many authors have recommended that the measurement of 24-hour creatinine clearnace be abandoned. ..." (Coping With ..., page 147)

Ah, HA! Learned something else. I ate a breakfast before the last blood test, because we had to go straight to another appointment. Should not have, as food going in can affect the creatinine readings. (Walser in Coping With..., page 148: "The morning of the test, take your medications as usual but eat either a light breakfast or no breakfast (because a large meal changes kidney function).") Dr. Walser also suggests that one should not test the creatinine level without first taking cimetidine, which we know by the brand name Tagamet.

Because my body cannot handle pretrochemically derived medicines any better than it can handle petrochemically derived flavors and fragrances, I don't take medications. Including cimetidine, but I do take supplements.

Here we go again . . . another up in the old creatinine, proving once again the kidneys are not happy campers and are failing. That of course, is determined by the blood tests. And, yes, PROGRESSION, PROGRESSION, PROGRESSION rings loud and clear, especially as I push closer and closer to July 26, 2006. But I keep telling myself: HEAL, HEAL, HEAL. I'd settle for even a little healing. I'm not hoping to be back to 20 years of age, just a healthy 68 would do very nicely.

Alas, I can't ask my questions about fragrances and other chemical assaults without being ridiculed by Kaiser nephorogists. I truly was hoping to learn IF most recently my encountering fragrance poisoning at Berkeley's Earth Day tabling event, and my perfume poisoning at Penny's at Richmond's Hilltop -- it's got to be pumped throughout that store, so BEWARE! -- the Sunday before the blood draw on Tuesday, have anything to do with this sudden jump from 3.5 last month to 4.3 this month?

The good news is that my potassium is still in normal range and my phosphorous has dropped back into normal range. (Too high phosphorous and you start leaching calcium from your bones, so they say.) And then, just a tad unsettling is the news of Kaiser's nehprology department regarding transplant patients. Yeah, sure, despite chemical injury, I'd really want to rush into transplant. How much of a dope do they think I am????
(http://www.kaiserinjurylawyer.com/CM/CasesandResults/Kaiser-Kidney-Transplant-Program-Injuries.asp)

Other articles: Lawyers and Settlements, Justice for Everyone October 15, 2006. By Heidi Turner http://www.lawyersandsettlements.com/articles/kaiser-kidney-program.html

Kaiser Permanente Kidney Transplant Program Lawsuit http://www.lawyersandsettlements.com/case/kaiser_kidney_classaction?ref=article

I haven't found any information for people such as myself, who do battle to try to remain as healthy as possible, sans drugs, for as long as possible. My problem is that the nephrologists are trained to prescribe drugs. They haven't a clue as to how to deal with a body that has already had more than its fair share of adverse reactions to petrochemically derived drugs, which are commonly prescribed.

June 25, 2006

But, something else has popped up in my mind . . . something to surely set off nephrologists. I wonder if MCS -- at least in my case -- could have been the result of the kidneys trying to process those toxins that I was breathing in and absorbing. And because we who are generally healthy are blessed with more kidney function than we really need, have symptoms that we ascribe to MCS, but as it turns out, could also be symptoms like those I'm told to look for that are associated with rapidly deteriorating kidney function. I guess raising questions like these assure the fact that I'm considered to be an "Unfortunate woman with a very non-mechanistic view of the cosmos ..." (Quoting the second nephrologist's opening comment.)

But considering the fact that far too little is known about the WHYs behind kidney disease and kidney failure, and too many people learn of it only after being hospitalized for some other disease, it seems to me, it is high time some of my questions are considered. And more importantly, even more questions should be raised. Please start with a look at the 100,000 chemicals released to market without substantiation of safety, found in products commonly used for personal care, as well as household and janitorial cleaning and maintenance projects. Products whose chemicals our bodies inhale and absorb. Chemicals that are also found downstream where they are adversely affecting aquatic and wildlife.

Talk about Al Gore's An Inconvenient Truth . . . we are all living it and its ramifications whether we and our doctors are bright enough to realize it or not.

"The patient refuses to accept that she has serious kidney problems. She claims that her creatinine reading is just a number and doesn't reflect her kidney functional status. She doesn't believe in taking western medicine and strongly believe[sic] that her body is sensitive to all these meds. Her blood pressure is very high,[sic] I explained the deterious[sic] [he had to mean "deleterious"] effects of hypertension on the kidney functon and other organ functions, the importance of taking antihypertensive meds to control the blood pressure. But she still refuses taking any antihypertensive meds and other meds (procrit to treat anemia et al)"

Serious Adverse Drug Events Reported to the Food and Drug Administration, 1998-2005 http://archinte.ama-assn.org/cgi/content/abstract/167/16/1752

--barb

I'm thankful for the undying support of my family and friends, my alternative health practitioners and my Kaiser Internist who knows that I react adversely to drugs, fragrances, pesticides . . . HYDROCARBONS! Without their support, I'd not have made it this far.

The phlebotomist wore a scented product. I realized quickly that I needed my respirator. She turned her back to work at the computer and when she spun around to draw my blood, she was decidedly shocked to see me in double cartridge respirator. I told her I was sorry I had given her a fright, and she apologized to me for her startled reaction.

I tried to explain to her that her body's visible shudder was what my body does internally when forced to inhale the toxins in another person's perfumed products. She apologized for having used a scented lotion, telling me she really should not have, but she forgot. I then told her she may wish to explore the toxins used to create all of the modern synthetic scents and think twice about subjecting her own body to those poisons . . . let alone the bodies of her patients. Maybe a change will take place . . . ???

Now they are after me with a money-making offer. I could earn stipends of $30, nine times; $45 once; $50 once; $75 twice; and $100 once. Which, if I've tallied that up correctly and added correctly comes to $615. Now, the kick is: Join the study for FibroGen's experimental drug called FG-2216.

IMPORTANT WARNING: Ê
All patients:
Epoetin alfa increases the risk of blood clots forming in or moving to the legs, lungs, or brain. Call your doctor immediately if you experience any of the following symptoms: pain, tenderness, redness, warmth, and/or swelling in the legs; shortness of breath; cough that won't go away or that brings up blood; chest pain; sudden trouble seeing in one or both eyes; sudden trouble speaking or understanding speech; sudden confusion; sudden weakness or numbness of an arm or leg (especially on one side of the body) or of the face; sudden trouble walking or loss of balance or coordination; sudden severe headache; or seizures. ...

Epoetin alfa may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:
• headache
• joint or muscle aches, pain, or soreness
• nausea
• vomiting
• indigestion
• stomach pain
• diarrhea
• constipation
• difficulty falling asleep or staying asleep
• rash
• itching
• pain, burning, numbness, or tingling in the hands or feet

Some side effects can be serious. If you experience any of the following symptoms, or those listed in the IMPORTANT WARNING section, call your doctor immediately.
• fever, sore throat, chills, cough, and other signs of infection
• redness, swelling, pain, or itching at the injection spot
• spreading rash over the whole body
• hives
• swelling of the face, throat, tongue, lips, eyes
• wheezing
• difficulty breathing or swallowing
• hoarseness
• lack of energy
• feeling cold most of the time

Epoetin alfa may cause other side effects. Call your doctor if you have any unusual problems while taking this medication. http://www.nlm.nih.gov/medlineplus/druginfo/meds/a692034.html

October 14, 2006

All nephrologists I've seen are hell-bent on convincing me that I have renal disease. DUH!

I have already had more than my fair share of adverse events associated with commonly prescribed drugs. In the 1990s I told my internist: NO MORE DRUGS. If prescribed, I would not take. They've not been prescribed, but drugs have been strongly suggested. Time and again. It's how the medical industry is trained.

I have come to realize, after much research, once the nephrologists make you so sick you have to go on drugs and dialysis -- and they all talk about transplant, which means a life hooked on drugs at best -- they experiment with drugs and dosage. Time and again, doctors adjust dosage or they add a drug to help with side effects of a drug they've already given. It's all one big experiment.

An aside: I personally have never lived through such pain as jade ball rolling. I've always had my teeth filled without Novocain, had all three babies via natural childbirth, have sustained some pretty nasty cuts which I self-treated with salt water baths and butterfly bandaids. Admittedly I've not yet broken a bone and nor have had surgery, so I've not a clue as to what that pain is like. But, let me tell you, the rolling jade ball treatment has had me finally really understanding the words: keening and writhing. As promised, the intense "craaaazzzzzzzzy" pain has largely subsided. But the area of the legs inside the shins -- along the kidney meridian in acupuncture -- is still incredibly painful when treated. Let alone, simply touched. One hopes that when that intense pain leaves my legs, the kidney blood tests will show some improvement.

Interestingly to me, that leg area that is so very painful with Jade Ball healing is the VERY region where I used to develop the largest and deepest, spontaneously cratering, extremely slow-healing sores. Those sores were a direct result of the monthly spraying in the workplace of pyrethroid pesticides. And, they used to tell me over and over, just how SAFE those poisons were. Ha! Stupidly, I never took pictures of those sores, but I still carry their scars. Some were quite deep. All took many months -- six to nine -- to heal, and then I was left for a time with huge brown circles of colored skin around the very spot that had been a hole. Strange. My Mill Valley acupuncturist had another patient with the same type of brown spots, but on her back, and when he queried her, she too, said, "Pesticides."

My former workplace had a pesticide team come in and spray on a Friday and within a couple of hours of my appearing at work on the following Monday, those sores, those non-bleeding holes, would just appear. Mainly on my legs and feet. Painful they were. And UGLY. But also interesting because I -- along with my internist and some friends -- could watch my body work to repair itself. The deep sores would slowly, over many months, fill -- grow new tissue -- from the deepest spot up and from the outside edges in. Once "healed," I was left with those huge brown circles I mentioned above. I began acupuncture in August 1998, a couple months before finally taking early retirement, and my acupuncturist began "circling the dragon" -- placing needles in a circle around the wounds. That faded the brown spots and speeded up the healing of my current sores, which were still appearing until I retired from that toxic environment. To this day, you can see many of my scars. I call them my chemical battle wounds.

It was a battle to try and get that workplace to see the need for indoor environmental quality. Alas, they never did get it, until so sadly, two highly thought of, younger male colleagues died of pancreatic cancer.

Yet, during my tenure, I counted the folks suffering from a variety of cancers and benign tumors (me included), migraines; recurrent asthma, lung and sinus infections, bronchitis and pneumonia; repeated cold- and flu-like symptoms, swollen lymph nodes; dermatological problems . . . I saw all as showing signs of chemical injury. Just like me. Only my body went into Multiple Chemical Sensitivity, with all major organs affected. Therefore my body exhibited the Many Chronic Symptoms associated with MCS. In my case, MCS included all of the above, except cancer and pneumonia. I really hadn't suffered headaches throughout most of my life, but I developed migraines then. Thankfully, once retired and under the care of an OMD for a couple of years, I can again claim, No more migraines! I still get headaches occasionally from assaults via petrochemically derived fragrance products, but even they are lessening in frequency and in intensity. Of course, a visit to Kaiser is frought with problems because of all of their scented products spread so liberally throughout their facility.

Oh, my, how I have digressed. Back to my attempts to ward off dialysis for as long as possible. . . .

Of course, I have no proof. But I strongly believe, based on my past experiences in trying to control MCS symptoms by drugs, that had I just blithly followed the dictates of the nephrologists, I'd have been one very sick puppy and maybe even dead by now. It's not lost on me that it was predicted I'd be on dialysis or dead by July 26, 2006. I'm convinced -- but how can I possibly prove it? -- that that was the timetable for my death IF I had agreed to have taken the recommended drugs.

What I do know, and have proof of, is that by doing it my way, I have continued to live life fully, have continued to enjoy such activities as climbing a hay stack structure, sliding down a tube slide, walking through a tunnel of straw bales and up a barn-style ladder to the top of said straw structure. All made possible by visiting the Western Railway Museum and their annual Pumpkin Patch event with our local daughter and her little son. (http://www.hauntedbay.com/reviews/westernrailway2005.shtml or http://www.wrm.org/events/upcoming_events.htm)

Not only do we enjoy life, but I also keep up with laundry, cooking, cleaning, etc. Well, "sort of" on the house-cleaning! But definitely I keep up with playing with the grandchildren.

-- barb

Please know that one can choose to go drug-free and dialysis-free. We can choose what is reportedly a rather gentle death instead of agony of surgery that may or may not work the first time, and dialysis in an area loaded with chemicals one cannot be around in the first place.

January notes:

And, just so you can see that I still look . . . and I tell you I still FEEL . . . quite healthy, here is a picture of me the end of December 2006, sporting my new sweatshirt. It is a gift from my brother and sis-in-law. Now you know I'm not fudging, because it is my World Series gift number two. First it was my beloved Cardinals winning the World Series and then the special commemorative sweatshirt, picked out for me by my sis-in-law and brother.

For those interested in baseball, I grew up following the Cards in the 40s and 50s. My grandmother and great uncle used to take me to old Sportsman's Park. My dad and I were the avid fans in our household and would listen to the games in the car, when we were in the Ozarks on the weekend. The car got better static reception (Yes, static reception) than did the log cabin home, which didn't have electricity for the first several years we had the place. Eventually, wires were strung, but those early years saw me doing homework by kerosene lamp . . . or struggling to hear the Cards game over the car radio.

Now, for my next wish: To live longer . . . in a more peaceful world, with an administration that is more mindful of planet Earth and all its beings. Time will tell.

March 13, 2007

Symptoms for worsening kidney disease are so much like MCS symptoms, fragrance poisoning symptoms and detox reactions that my doc wanted to make sure it was the Zeolites causing my reactions rather than worsening kidney disease . . . despite the fact that my numbers have improved to some extent and those that haven't improved are holding their own.
-- barb

March 30, 2007

Waiora Scientific Advisory Board
Response to Campbell's attack on liquid zeolite
Rik Deitsch's response to the Campbell criticism (Mar 06)
http://www.liquidzeolite.org/criticism-campbell.html

Early April 2007

-- barb

Title: Good intentions paved THAT road . . .

Chpt. 1 - Oy vey! (car poisoned by deodorizer added as a gratuity by mechanics. Took three days of ozone generating to clear it enough for me to be in it again. The final day was following Ashley's advice of running for an hour, off for an hour to air it out, back running for an hour , then off ... throughout the day. Thank YOU, Ashley!)

Chpt. 2 - Irregular irregular (husband's heart, high BP, extremely erratic and extremely fast pulse . . . HE, who must be obeyed, HE who always claimed fragrances never bothered him, at most, only gave him a headache. Ah Huh)

Chpt. 3 - Our angel with two wings (Betty Bridges comes to town . . . two wings vs. the one wing that our dear friend and mentor, Irene Wilkenfeld -- passed away February 29, 2004, the result of Chlordane exposure 34 years before -- had ascribed to all of us. Irene had claimed that we all were one-winged angels holding up one another. A beautiful thought I've tried to hold near and dear to me down through the years.)

Chpt. 4 - Dead on the kitchen floor (Kaiser doctor filling in for my doctor called me with that bit of hysteria at 8 a.m, Friday the 13th; the good news is Betty got us both into ER . . . Bill was kept overnight because his heart was really out of whack due to the strongly scented car deodorizers; I was released to my own recognizance that afternoon, when potassium showed a drop. But, "Dead on the kitchen floor" is further explained in larger tale, below.)

Chpt. 5 - What are friends and kids for? . . . Much did I know (Betty here to guide us, daughters with the four youngest grandchildren arrived to also help and visit.)

Chpt. 6 - Lost and found (perfume poisoning led to my losing my purse, found by an honest fellow with Velo Sport in Berkeley. Then my local daughter's neighbor's daughter played hide and seek -- for a while -- too successfully. She was found hiding in a closet . . . after we all frantcially combed the neighborhood. This when Betty joined us at our local daughter's to see another section of the Bay Area before her departure.)

Chpt. 7 - Here we go again . . . and again . . . and again (the umpteenth time I had to call Kaiser, trying to inform them that I was still very much alive and it wasn't my fault that their emergency room computers do not talk with the rest of their computer system and the downloading of the chip happens, WHENEVER. It still hadn't happened by the evening of April 18, which meant, there was no record of my being in ER on the 13th. And the really irritating thing about that experience? Learning that Kaiser staff don't know how to pick up a telephone and call to ER to see if, indeed, a patient did go in as requested.)

Chpt. 8 - Home again, home again, jiggity jig (All of our visitors arrived at their respective homes safely)

Chpt. 9 - A Kaiser we will come, A Kaiser we will come, hi, ho the dairy oh, A Kaiser we will come (more tests: blood for barb; blood, urologist and ecocardiogram for Bill)

Chpt. 10 - The leg that was a melon (That will teach THAT leg to never cramp again! Of that I feel sure if there is anything at all to this mind over matter stuff. The cramp was eased into little kernals of cramps and then eventually totally gone. But the work made the calf swell, hence my the leg that was a melon line. The great news is that even though it had swelled, I could use the leg, which hadn't been true during that three-hour long cramp. This chapter had nothing to do with Kaiser . . . thought I'd throw in something different for a change. And praise my young acupuncturist who gave up his yoga to stick with my leg so I could use it again.)

April 2007 -- Dead on the kitchen floor! Not.

Friday, the 13th, no less. We had just welcomed Betty Bridges (Fragranced Products Information Network) at midnight, and Betty and I were having a gab fest that morning as the phone rang at 8 a.m. I received a call from a doctor filling in for my internist. She was a tad hysterical about my having to race into Kaiser Emergency or otherwise I could be dead on the kitchen floor within 24 hours. She would not accept my statement that my heart was fine, that my body can handle a bit more potassium. She was adament as the blood test I had the day before indicated that I had a potassium reading of 6.09 and the allowable high is 5.3.

Betty talked to me ever so gently about it being best to go in. She also knew that Bill was having troubles with his heart and convinced me that if I'd go, we could get Bill in, which was really important. With Bill, she told him that if he would consent to go in, he'd be able to get me in to be re-checked. And so with that, we eventually headed to Kaiser's ER. I had blood drawn for a potassium check . . . it was already on its way down. I also had an ECG and that proved my heart was as OK as I had told the doctor it was. I signed myself out, asking -- and being assured -- that the Urgent Care appointment that was booked for me against my wishes would be canceled. As it turned out, it wasn't.

Although I was at Kaiser that entire day because my husband did have heart problems due to deodorizers having been applied heavily to our car, Kaiser hadn't a clue. Now please keep in mind that line about being dead on the kitchen floor for it rears up later.

My husband's problem was the result of deodorizers in our car. Alas, it was our well-meaning mechanics who applied the deodorizers because they didn't know that fragrances are neurotoxins that can adversely affect the cardiovascular system!

Betty and I were about a block from the ER, when my cell phone rang. "Oh, Lord," thought I, "Bill." But when I answered, I heard, "Berkeley Police Department." Sigh of relief. Not about Bill.

-- barb not-so-dead-on-the-kitchen-floor wilkie
April 19, 2007

See A scary venture: Flying in the face of medical "wisdom."]

June 10, 2007

By Barb Wilkie; June 2007

With worsening kidney health -- not only the creatinine and BUN had soared, but the hemoglobin and hematocrit (red blood cells) had dropped to the lowest I'd be allowed to go without medical intervention being strongly suggested.

I've had more than my share of Kaiser scentitizing experiences the past couple of months in being with my husband for his various tests as he is now battling prostate cancer. Again and again, my body has screamed at me: Kaiser is a source of air pollution due to all the fragrances everywhere. I could not use the bathroom in Emergency without being poisoned when I was called in in April for my too-high potassium reading. (At least the staff back in Emergency were not loaded with fragrances and for that I was thankful.)

But, fellow patients were enough to do me in . . . And on that score, Kaiser for whatever reason seems to steadfastly refuse to begin an education program of its staff, members and visitors. Why? Kaiser is a "society" of members and surely its many publications and notices stuck up on walls and in elevators could begin carrying the message: Fragrance products are volatilizing chemicals that pollute the air for all. Please do not use or wear scented products when coming to Kaiser. If they want to elaborate, they could add something like this: Fragrances should be used only among consenting, nonpregnant adults in the privacy of your own home.

Kaiser could educate patients and visitors, and certainly their own staff. All staff. Doctors, nurses, medical assistants, as well as all admistrative staff, and even contractors. There is no reason why any one of those folks have to wear the superfluous toxins commonly and benignly known as "fragrance."

So, knowing how my body reacts when I'm around Kaiser and its plethora of scents, I had my blood drawn for a microscopic test of live and dried blood cells. My cells all ganged up, were terribly misshappened, had "bull's eye" like centers of white showing -- generally, my sample of live and dried blood showed my diet was far too acidic. Too many carbohydrates and protein.

GULP!

Before starting greening and salting our bodies, we went through a couple of weeks of transition. During that time, we had the anniversary celebration with the kids in mid June (our kids are all still in their 40s, and they have kids ranging in age from 19 to 3). My husband and I split a serving of salmon and fresh steamed vegetables, along with each of us having a salad. We had a grand time at Parkside Cafe in Stinson Beach -- http://www.parksidecafe.com/ -- and had an alkalizing meal to boot.

As with most things in our 50 years, we are now on this diet together. Bill is battling a recently diagnosed aggressive prostate cancer and I am still waging war on renal disease. Together we had our blood tested; together we had our blood re-tested. In two weeks time, just in the two-week transition stage, we both saw remarkable improvement in the look and shape of our red blood cells. We could even see white cells moving in for the kill of some bacteria. Very interesting! Our source of education and entertainment? Justin Schmidt -- http://www.phitness.us/ -- who was trained by Robert O. Young, PhD of pHMiracleLiving.com. To see the book, go to http://www.amazon.com/exec/obidos/ASIN/0446528099/ref=ase_wwwphmiraclel-20/102-0138622-6385721.

After a week on the greens diet, I asked for an interim blood test through Kaiser. The potassium count had gone up to 5.7 that first week, however, as I've lived through a potassium reading of 6, I did not hear a peep from Kaiser about the potassium being too high this time. While I had cramps at that time, which ran along my feet and hands, legs and arms, I did not have an irregular heart beat. That I tend to get when my potassium is lower, like Kaiser likes it.

And now, following the second week of this special alkalizing diet, many of my blood cells look normal under a microscope and I no longer have any trouble with cramps. We'll see what the July and August Kaiser blood test readings tell us . . . I'm hoping against hope that the creatinine and BUN will drop dramatically and the red blood cells will show an increase and that the rest of the stuff will all normalize nicely. Pipe dream? Why not? For more on pH balancing, see below. What is the immediate good sign? A drop in blood pressure. While still running too high to please Kaiser, it only goes into the low 150s with a fragrance assault, instead of up over 200 or in the 190s, which it has been known to do in the not too distant past. We even spent a night at Stinson with fabric softeners in the air, and I held steady in the 140s. Unbelieveable for me. It must be the alkalizing of the blood . . . for there are too many records of my blood pressure soaring when exposed to fragrance products, and espeically fabric softeners.

Stay tuned . . . follow along with the blood tests. See if this alkalizing diet might be something you would wish to try.

Alkalizing -- sugar and yeast reduced -- diet roughly means we eat NO vinegar, potatoes, mushrooms, beans, oranges, bananas, beets, carrots, wheat, breads of any standard description, certainly no desserts . . . although we did eat millet bread during transition. We eat NO dairy -- but then, many doctors tell renal patients and cancer patients, "NO DAIRY." We also do not eat generally sweet stuff, which is why we eat no beets, oranges or carrots. IF we need something sweet, it's Stevia that we take on our occasional bowl of Buckwheat cereal. But we find that if we open a packet of that, we share just a teeny amount as it is excessively sweet by our standards.

We do eat -- and I dare say, enjoy! -- avocados, artichokes, asparagus, lettuce, kale, cucumbers, tomatoes, broccoli, spinach, cauliflower (mashed to make faux mashed potatoes), grapefruit, limes and lemons. The later three, while seemingly acidic, supposedly become alkaline in your body.

Thus far, this is all the good news . . . and it remains so for my husband, but then, he was not living with chemical injury since age five, and made far worse in a toxic workplace, either. (You can drop to the record of the July blood test.)

But in my case, I'm not only living with stage five kidney disease, but also the effects of living for 64 years with varying degrees of chemical injury. So, by the end of June, I started experiencing some really strange symptoms. The worst of it was Parkinson's-like symptoms, which lasted three weeks, but with lessoning jerks, shakes and tremors as the time wore on. By my birthday, mid-July, I only had an occasional buzz around my lips or in my finger tips and got through my birthday celebration without a spasm.

-- barb

Because of his cancer of the prostate gland, he couldn't urinate properly to fully empty his bladder and because of that Bill started developing kidney disease as well. Just what this family needed: husband and wife kidney patients!

A new adventure. Trouble is, I live with both kidney disease and MCS and frankly, it is difficult to tell which is rearing its ugly head, when. But, life does get interesting! Next comes an experience . . . and for me, fortunately, that's all it was. But it sure scared the everlovin' outta me at the time. And the time was long enough . . . approximately three weeks in duration for the major aspects of it, and several months as it slowly waned. I learned quickly enough what it's like and I don't really relish having any more of this experience.

Well, the first news from blood tests, following the greening, was great with a dramatic drop in the cretinine and also the BUN.

All in all, I'm doing remarkably well considering my diagnosis and the medical threats of losing my mind and death within one year of diagnos in July 2005. I am now 69 years of age, having outlived both of my parents. Of course, both of them had smoked, and I did not. Despite what that first nephrologist put down about me.
-- barb

July 31, 2007

August 5, 2007

August 7, 2007

August 8, 2007

August 23, 2007 update

August 28, 2007

Early September 2007

September 2007

I sure hope my experience lets everyone know that one does not have to take the drugs that make them even sicker. I've had a healthy-feeling two plus years now since diagnosis and for that I'm extremely thankful. I would not be able to make that claim IF I had gone on the nephrologist's drug/dialysis regime.

Please know that one can choose to go drug-free and dialysis free. We can choose death instead of agony of surgeryfor dialysis that may or may not work the first time, or repeated times. And then, the dialysis center can be an area that's loaded with chemicals that one cannot be around in the first place. My family and I are very thankful I have chosen this way to live with kidney disease.
-- barb

-- barb

-- barb

Update: Over the next several weeks, I had a series of chiropractic appointments and acupuncture appointments that dealt with my locked up neck. It finally broke free sometime around June. The lesson here: Do not be too quick to say, "It's OK!" following an accident. It jolly well might not be OK. Sometimes it is stupid to just be a little too nice.

It's not that I'm doing nothing, for as you read below, you will learn I'm doing lots of somethings!

First, diet. And then, acupuncture, chiropractic, alternative health care through a medical office, jade ball healing and massage therapy. I've been in the business of staying alive and so far, that has worked well for my family and me. And, most importantly, thus far, I've enjoyed a quality of life that never would have been mine had I followed the advice of the nephrologists and taken their prescribed drugs and dialysis. I'm a month away from my second anniversary past my first death sentence and still feeling relatively good . . . despite relatively bad numbers.

I've also declared my own moratorium on seeing nephrologists as so far none have figured out a way to help an already chemically injured patient who cannot tolerate petrochemically derived drugs. They, to a man, have never heard of such a thing as MCS. I've suggested that could be a reason why 100,000 die each year in hospital from prescribed drugs and have added that I don't want to be reflective of that statistic. I'll let my kidneys die naturally . . . while I try to support them as long as possible with good nutrition, supplements, acupuncture, chiropractic, massage therapy and, of course, important help from my Kaiser Inernist and Holistic Internist, too.

Well, you can choose to live healthfully, without drugs and then die a natural death rather than one hastened by pharmaceuticals and medical practice. And that is what this page is all about. My living while dying.
-- barb

Thinking back four decades, in a different world (St. Louis area), and Bill slowly recovering . . . We packed a picnic lunch, took our three-year old and youngest child with us to a nearby park (Ladue). Bill still could not sit up much, so we spread a blanket and he was lying down on that blanket with our youngest running around nearby. I served lunch. So far so good.

WHAT?!?!?! I all but shouted. NOT GET OUT OF BED???? Do you know what all I did today? I did the laundry, washed the kitchen cabinets down, washed the floors, made the beds . . . that with laundry is up and down stairs all day, and I ran the vacuum. What do you mean I can't get out of bed? I left the poor person stuttering.

But, back to my experience the very early hours of July 14. I awoke with the windows open and my heart racing and pounding out of my chest. I was dizzy and had a severe headache -- hadn't had one like that since I left the toxic workplace in October 1998. By the time I got myself to the john, I was very, very sick. Both ends at once.

My 70th birthday. I'm only a little younger that the FDA's Cosmetics Act! Bill and I used to love to travel, either driving or by train. We took the train from St. Louis to the west coast three times to visit his folks while we lived in St. Louis.

Between Bill and me, we are seeing a lot of our young eye doctor. Fortnately he is unscented, doesn't use that hand cleanser and respects my body's adversion to drugs.

See: Press Releases
San Francisco, Calif. - January 30, 2009

March 11, 2009

March 13, 2009

Of course, the FDA only claims to be the "Authority Over Cosmetics," which means it is supposed to care about fragrances in cosmetics and personal care products. We all are out of luck when it comes to fragrances in any other product. The Consumer Products Safety Commission should be over scented cleaners, air "fresheners," laundry products, including fabric softeners that pollute the ambient air for blocks, but they donÕt seem to care any more than the FDA does. The EPA is supposed to be over air quality, but if it is a fragrance or flavor, it has been my experience to be bounced back to the FDA, even if that scent is in a cleaner or a detergent, or fabric softener. Yet, it is the EPA who assures us that our indoor air is often far more polluted than our outdoor air. Imagine!

Sadly his mother passed. She was diagnosed with kidney failuer about the time I was, but she was surgically prepared for dialysis and went right on it. She really didn't do too well, but more than that, I don't know. She also had age against her as she had another decade on me. However, her case again makes me ever so thankful that my kidneys still make urine and so far, I'm doing just fine without drugs and dialysis . . . at least just fine by my standards.

Bill and I continue with our appointments . . . for me that still means Jade Ball rolling, acupuncture, NHI and massage therapy, chiropractic and every other week, a trip into SF for Bill's vitamin C drip and my push and laser treatment and bio feedback.

We had lunch at the Red Onion up on San Pablo (http://www.yelp.com/biz/the-red-onion-el-cerrito) and then dinner at Brennan's (http://www.brennansberkeley.com/) down by the Berkeley Amtrak station. We hit some of our favorite spots . . . all day long.

Mark Knopfler's All That Matters

Potentiation of GABAA receptors expressed in Xenopus oocytes by perfume and phytoncid.
Aoshima H, Hamamoto K.
"...these results suggest the possibility that the intake of perfume or phytoncid through the lungs, the skin or the intestines modulates the neural transmission in the brain through ionotropic GABAA receptors and changes the frame of the human mind, as alcohol or tobacco does."
http://www.ncbi.nlm.nih.gov/pubmed/10361687

During this time of pain, I experienced Gua Sha (http://www.guasha.com/); cupping and electric stim; Tui Na Orthopedics; cold laser treatment; regular chiropractic adjustments; Jin Shin to get my energy flowing and pulses balanced; and, massage therapy with Jade Balls by my Berkeley acupuncturist as my Korean Taoist healer had returned to his homeland; and massage therapy by the hands of very capable NHI students. All felt as if they were helping the pain while I was being treated, but minutes after treatment the pain would kick back into gear again. This is most unusual for me as I tend to quickly rebound from a misery of one sort or another and into a healthier state.

SAFE means: "protected from or not exposed to danger or risk; not likely to be harmed ..."
WHOLESOME means: "conducive to or suggestive of good health and physical well-being ..."

Some pictures:

The main page is http://www.flickr.com/photos/ken_duffy/sets/72157622130766008/

If you mouse over the faces here, you can get some names -- Tom on left side of group, standing
http://www.flickr.com/photos/ken_duffy/3851263816/in/set-72157622130766008/
Tom sitting, right side
http://www.flickr.com/photos/ken_duffy/3851239178/in/set-72157622130766008/
Quintessential Tom . . .
http://www.flickr.com/photos/ken_duffy/3850478641/in/set-72157622130766008/

• Slow Medicine
  http://dartmed.dartmouth.edu/spring08/html/grand_rounds.php

• For the Elderly, Being Heard About Life's End
  (And for those who wonder, while I am classified as "elderly," I do not feel elderly! -- barb)
  http://www.nytimes.com/2008/05/05/health/05slow.html

• My Mother, Your Mother: Embracing "Slow Medicine"
  http://www.mymotheryourmother.com/slowmededu.html

   

• Partners in Slow Medicine: An interdisciplinary organization
  http://www.mymotheryourmother.com/slowmededu.html

It's nearly two months since the onset of the unexplained pain in the area of my right shoulder, between the blade and the spine. It still pops up every now and then, but it has been greatly relieved and also quickly leaves with the use of my friend's HoMedic Therapist Selectâ Percussion Massager and/or my heating pad.

Mom
Thirty-three years ago today, my brother, Bob, and I said our farewells to Mom.
Mom had been a smoker . . . she tried smoking when a young teen and her mother stopped her and told her that she was not to smoke until she was married and living in her own home and then, if she were stupid enough, and her husband allowed it, she could smoke if she chose. Well, her husband not only allowed smoking, but he, too, was a smoker.
The interesting thing about my parents, is that when they wanted to make a baby, they stopped smoking. As I recall the story told, Dad returned to smoking as soon as I was conceived, but Mom stayed off cigarettes until I was two. I remember her often telling me during my childhood, that she wished she had "listened" to the face I had made when I first spied her lighting up when I was but two years of age. She repeated the "No smoking" rule when she wanted to have my brother . . . and went back to smoking after he was weaned.
In Dad's case, he lost his lower jaw, 2/3 of his tongue, the glands in one side of his neck and that top rib in November 1962 at age 60. He had been a handsome man, only to spend the last seven years of his life so marred. He often complained that he merely had exchanged one severe pain for another. He taught himself how to talk again, and in January 1963, he returned to his chiropractic practice. He lost a few patients because they couldn't deal with a man who now lived with but one jaw, but he also gained new patients during those last seven years of his life, for he was a gifted healer. Dad also kept his wonderful sense of humor! I often think, IF Dad could, I can. He has been my beacon in so many ways.
Both parents had lived long enough to see all their grandchildren born. Dad died from a massive stroke August 7, 1969, so by the time September 1976 rolled around, Mom was ready to say goodbye to this plane. She had gotten a job after Dad's death, she had her two children -- me out here, Bob there in the St. Louis area with her -- Bob's and my five children to love, but she missed Dad terribly and she really did not want to go on and on and on.
Mom, of course, lived with Dad through all his trials and tribulations and so when in May 1975 she awoke one morning with a laryngitis that then never left, she determined that she wasn't going to have surgery. Mid-January 1976, Mom underwent a biopsy and then started a series of cobalt treatments, but she wasn't about to go through life talking through a device.
Mom worked up until the day after Labor Day, September 1976, but got so sick at work, they called a cab to take her home. That night, Bob called me and I started laying plans right then and there for a flight back to St. Louis that coming weekend. I lined up friends -- indeed, one family was here that very evening for dinner -- to help watch over Bill and our three kids (Tom, 18, Liz 14 and Joc 11). I shopped and made and froze a series of meals, for I had no idea of how long I'd be back with Mom. As it turned out, I was there one month, leaving only after I had cleaned out Mom's flat following her death.
That first week I was there was more or less as if I were on vacation. Yes, Mom was weak, but she was still alert and up to visiting. Some of her friends stopped by to see her, and her one living sister and her husband (a lawyer) came by daily to visit . . . and to help with the transfer of documents so that Bob and I were officially part of Mom's checking account, etc.
The second week I was there was very different. Mom had always been one to bounce out of bed with a bright smile on her face and a song in her heart if not on her lips. That's just the way she was . . . here, there, everywhere. However, this one morning, she came out of her bedroom with a decided scowl on her face. I knew we were in for a change . . . and when she obviously couldn't figure out who the hell that was standing in her "office," I knew I was really up against something else. A jabbing finger at me accentuated the fact that I was suddenly a total stranger to Mom. And then she began accusing me of stealing her desk and her electric typewriter. "It was RIGHT THERE!," she kept exclaiming.
There was no way to convince her that I was her daughter and we were standing in her kitchen with her familiar table and chairs. It only grew worse when the food she had been eating and drinking suddenly tasted terrible to her. I could understand that for her tumor was growing . . . and developing a decided odor. It had to be affecting the taste of her food. What was rough was her accusing me -- this somebody she had no idea who -- of trying to poison her. I was at a loss.
Fortunately, I had my aunt and uncle coming in for daily visits to cheer me up and to give me a break and every evening my dear brother would come down to spend overnight at Mom's. Frankly, had it not been for them, I'd not have been able to handle that experience. Bob kept me laughing when often there seemed to be not much amusing about our situation.
I was, of course, very sensitive to odors. What was something I discovered in those days -- long before I knew anything at all about MCS -- was that once an odor came into my body, my system could not let go of it. That came to be a real problem as more and more petrochemically derived fragrances were pushed on the market without full substantiation of safety, and that was even a problem with my mother's cancer.
In fact, I used that phenomenon to help clear my head of the odor of my mother's cancer. It's the HOW? that would leave everyone shaking his/her head. When my aunt came in, I'd take a walk . . . up Chippewa (Rte 66 through St. Louis in that area) up to Kingshighway, and then up that street for a few blocks and then back again. My route was one that was heavily traveled by buses, trucks and cars and I walked it so that I'd get to have the smell of exhaust with me for a while, to keep the smell of Mom's cancer at bay. IF I'd known what was in store for me MCSwise, in a few short years, I'd not have done that particular stunt, but at the time, it was a change in odor and that seemed like a help.
Also during that time, it was hot in St. Louis. Now I had been the same ol' Barb, but viewed very differently by two people who loved me dearly. Mom's sister, Laura, came in one day, noticed that I had a fan set up so that the air would bounce off Mom's bedroom door and into her room without blowing directly upon her. My aunt praised me highly for my thoughtfulness in taking such great care of her baby sister (Mom was six years younger and the baby of the eight kids in that family). I did not disabuse my aunt of her feelings. Why do that? She was feeling good about the situation as she saw it. However, I did feel just a little badly for not setting her straight.
That evening, my brother returned to Mom's in south St. Louis for the night following his job in northern St. Louis County. Bob walked in, greeted me, saw the set-up of the fan, and immediately stated: "So you found a way to blow Mom's odor back in on her without hitting her directly with the wind from the fan!" I knew all was still well in my universe as my brother really knew me!
Bob and I had some moments to treasure during that period of time. He often talked in his sleep -- that could entertain me no end. One night, I wrote down everything he was saying as best as I could. I read it off to him the next morning and we both howled. I don't think either of us could make heads or tales of it, but the words were there. Another time he was reading PS Your Cat is Dead by James Kirkwood as he fell asleep. He wasn't long into sleep -- we each slept on cots in my mother's living room -- when he suddenly reared up, grabbed his pillow and started wrestling it, yelling at the top of his lungs, "I caught the bastard, I caught the bastard."
One evening Bob arrived and when I saw him, I burst into tears. What a way to greet a brother! I quickly convinced him that I was fine; mom was fine; everything was fine . . . except, I had suffered an electric shock that day. And then, I burst into tears again, for I had done something incredibly stupid and against everything that Mom, Dad and Bob had taught me down through the years. "NEVER touch a chain for a light fixture while turning on a faucet!" was the lesson I was taught over and over . . . and pretty much adhered to down through the years.
However, this day, I had quickly used the bathroom and just as quickly wanted to shed some light and wash my hands and that's when I got zapped, but good. The shock seemed to have landed in my right elbow making that part of my anatomy quite sore for the rest of the day. I held it all together for Aunt Laura and Uncle Ernest's visit. I held it together for dealing with Mom. I lost it when my little brother appeared on the scene.
Bob took instant pity upon me and before even saying hello to Mom, he had the light fixture apart and then back together properly. It had been wired incorrectly by someone and it was just good fortune that Mom, in her current state hadn't received a terrible shock. Well, Bob fixed it so that was no longer a potential threat even if I did do something stupid again like turn on the light and use the faucet at the same time. (Which I didn't. Once burnt, twice shy! Or as President George W. Bush was to blunder many years later: "There's an old saying in Tennessee -- I know it's in Texas, probably in Tennessee -- that says, fool me once, shame on -- shame on you. Fool me -- you can't get fooled again.")
One time, during that last week of Mom's life, when we were trying to stay awake 24 hours around the clock, for she had stashed cigarettes all over and always found one that we could not find no matter how hard we tried, I began hallucinating. I'd had been up all day that day, and because Bob was still trying to keep up with his job, I was trying to stay awake so he could get some sleep that night. Long about 3 a.m. is when I had a black leopard leaping off the page at me as I was reading. At least I had the presence of mind to try to wake up Bob so that he could take over. He allowed me to sleep for an hour and then he had to grab another hour's sleep before heading out to work again. It would have been so great had we then had the U.S. Family and Medical Leave Act, which wasn't passed until 1993 under President Bill Clinton's administration.
There was also another time that Bob and I laugh about now, but he sure didn't think I was any too amusing back then. That morning -- and it was during that troubling last week of Mom's life -- as Bob left the house, he asked, "What about meat loaf for dinner tonight?" "Sure! " I proclaimed, adding something stupid like, "No problem!" Well, that was before the day was to unfold. The day that Mom was trying to get out of bed without help in her weakened condition. The day that I caught her smoking again and again! My goodness, a live cigarette with her in bed!!!! When my aunt arrived she was distressed enough about her sister's rapidly failing condition that I couldn't run out on her . . . not even to go across the street to get the makings for meatloaf makings. Nor did Mom stay asleep all that well that day so that I could make my dash to the market. Then, Bob arrived home, sniffed the air and could tell at the first sniff that there was no meatloaf anywhere near to being made. Poor Bob didn't even say a word to me about it, but I burst into sobs. My brother always to the rescue. "Wash your face, comb your hair and go across the street now that I'm here to get the makings. We'll just eat later tonight." Simple solution. We had a wonderful meatloaf dinner with mashed potatoes and gravy . . . and a beer! I made meatloaf the way Mom always did and it wound up tasting remarkably good to both of us. Mom wasn't eating anymore by that time. Not even "her" meatloaf.
Somehow Mom and I got through that period as if we were living a cold war sort of truce to the best we could. One time, when I helped her to the bathroom in that last week, she asked who I was. She was at least friendly at that moment. I told her I was Barbara. She told me, with a beatific smile upon her face, that she had a daughter named Barbara, but that she lives in Berkeley California and can't leave her husband and children. There was no way to convince her otherwise, not even as I sat with her, holding her hand.
The morning of September 30, I heard Mom active in her room and quickly checked upon her. She wanted to get dressed to go to a family wedding of a nephew, whose wedding she had already attended the very first part of September. She was determined to get into her pantyhose, even though she was having a lot of difficulty trying to do so. I sat with her on the bed and tried to talk her out of going. At one point, she mustered up all her strength to announce quite firmly, "YOU are obstinate!" I was so surprised that she could remember a word like that, even though she hadn't a clue as to whom she directed the charge. I shocked her when I replied, "NO! YOU are obstinate!" Not very original, but that sort of took the wind out of her sails and I could then get her to lie back down with a promise of massaging some Vicks into her back. By this time, she had pain in her kidneys and somehow or other the odor and warmth of Vicks seemed to have comforted her.
A little later I again checked on Mom. This time she was smoking her finger! The interesting thing to me was that she was taking a drag off the tip of her finger when I entered the room. She looked like the little kid caught playing with fire -- GUILT was written all over her face. Mom then demanded that I put out her "cigarette," adding quite strongly that "Robert didn't want her smoking in bed." True enough, but I couldn't convince her that he wouldn't mind her enjoying her finger. To her that was a live cigarette and it had to be put out. I was able to quickly retrieve my key chain, upon which was a brass bell without a clapper. That was acceptable to her for putting out her "cigarette" and so she ground that same tip of her finger into the bell. The tip that became the lighted end was just moments before the part she was actively smoking. The mind can certainly play funny tricks on one.
Still later, now early afternoon, I again checked on Mom. I found her typing. Typing on an old style typewriter with the carriage return. She was incredibly busy, typing away in thin air above her chest as she laid upon her back on her bed. Her fingers worked as quickly as I had ever seen them fly across her old Remington typewriter and she flicked that oh-so-real-to-her carriage return. It was as if she knew this was the 30th of September and she had all of her reports to finish by month's end. Once she finished "typing" she seemingly could relax and await patiently for Bob's arrival.
What remained very interesting to me at that time, and down through the years, is that Mom always knew Bob. Even as she was dying, she knew Bob had come home and had picked up his guitar to play for her as she left us about 3 p.m. She even raised up in bed as she heard him enter her front door. It was my pleasure to see that she had a huge smile on her face. Bob and I just stayed with Mom until the final breath shuddered from her body, with Bob softly playing his guitar. A nice way to go. (Or so I imagine.)

• Environmental Toxicology
  (Toxic & Chemical Exposures)
  http://www.environmentaldiseases.com/specialization-environmental-toxicology.html

• Forensic Medicine Solvents and Kidney Disease:
  Scientific Methodology Between Solvents & Kidney Disease Symptoms
  By Nachman Brautbar, M.D.
  http://www.environmentaldiseases.com/article-solvents-kidney-disease.html

Off to Jin Shin, but before going, down new pill from Paul to help clear gut. Artestatin . . . well, I just upped my heaving factor. Nothing came up, but I had the stomach action of heaving. Twice at Leah's during and after Jin Shin and once at home. The new trick to quiet heaves is to hold the insides of your knees. IF you don't have your hands free, just press your knees together.

• A metallic or other foreign taste in your mouth
• Tiredness
• Feeling cold
• Headaches
• High blood pressure
• Insomnia
• Itching and dryness of the skin
• Loss of appetite or nausea
• Pain in the small of the back in the area of the kidneys
• Poor concentration, confusion, forgetfulness
• Poor sex drive
• Restless or cramped legs
• Shortness of breath
• Swelling in the hands, feet, or face, especially around the eyes, when you just wake up)
• Urination problems, such as foamy or bloody urine, more or less urine than usual, or a change in how often you urinate

At least our Oregon daughter is back safe and sound from her trip to Boston and New York, where she had a wonderful time.

We head to Kaiser for a 9 a.m. appointment. We wait a long while. At least the area is free of scent and when we are finally put in a small room of our own, it has an UNSCENTED bathroom. I can't believe my good fortune, for I do not have access to Kaiser's public bathrooms, which I need often. It usually entails a long walk to a unit that has an unscented bathroom, which they kindly share with me. But today, the luxury of having a bathroom I can access brings joy to an otherwise troubling day.

Anyway, I'm told to practice saying Kah, Kah Kah to help rid myself of the lazy back of tongue, which will help me better regain speech. So, I go around sounding rather crow-like. My husband just loves it. I also continue other tongue exercises, as well as those for dexterity and walking. I keep pushing myself . . . but the thing I work on hardest is to do correctly all that I used to do in the past. Like preparing and serving dinners. Doing dishes. No rest for the wicked.

I admired Bill's stick-to-it abilities: Exemplified by Thanksgiving dinner many years ago . . . and including the last minutes of his life.

The favorite story going around from kids to grandkids was about the time at his Mother's for Thanksgiving dinner. She brought out the turkey as a masterpiece for her son to carve, which he did with the special fork and knife used only for that purpose. Carve with flourish, he would. But the little side table that the turkey platter was placed upon for Bill's efforts also had a drop leaf. The leaf dropped. Bill had fork in turkey, knife slicing turkey breast as platter and turkey moved to the floor -- gravity being what it is. Bill did not miss a beat. He followed that turkey, platter and all down to the floor without breaking the platter or dropping one piece of sliced turkey. He literally hung onto that bird with the fork and sliced his way to the floor. The kids and I (they were kids lo those many years ago) couldn't help but burst into laughter. Bill then saw what had happened and looked aghast . . . fortunately, his mother had been in the kitchen as I don't think she'd have taken it in the same light spirit we did.
-- barb

Biogetica
"Biogetica Inflammatory Kidney Disease Optimal-kit has been formulated to treat any kidney
problem that is inflammatory in origin..."
http://www.biogetica.com/cure-kidney-disease.php Definition, causes and symptoms of chronic kidney disease
http://www.davita.com/kidney-disease/the-basics/a/91

• How to delay the onset of dialysis
  They are talking about in the early stages of kidney disease and you should work with your doctor. Yeah, sure. I tried. I was mocked. But then, I was diagnosed at stage four and they truly seemed to feel I'd be dead in a year or a few months from when each saw me. It was their way or the highway . . . I would have loved to have found a nephrologist with whom I could work. As it is, I am thankful for my Kaiser Internist, and all of my alternative health care practitioners, for they have kept me going and going and . . . so far (July 6, 2009), going. -- barb
  http://www.davita.com/kidney-disease/the-basics/a/1646
  Household Chemicals May Show Up in Blood
  Study by Environmental Group Shows Toxic Chemicals End Up in Blood Samples
  By Kathleen Doheny; WebMD Health News; Reviewed by Louise Chang, MD
  http://www.webmd.com/news/20090501/household-chemicals-may-show-up-in-blood
  
  
• Phosphorus and chronic kidney disease
  http://www.davita.com/diet-and-nutrition/c/478

   

• Recipes [for kidney patients]
  http://www.davita.com/recipes/
  

To the beginning of my blood readings info General information regarding kidney disease . . .

Specific info . . . various items, including home diaylysis

Dear Folks: The following states it . . . what I've been saying about my body and the fact that I choose -- against many protests, mind you! -- to go it without drugs! -- barb

ALLERGIES AND CHEMICAL REACTIONS
by Grace Ziem, M.D.,DR. P.H.
"...The detoxification system may be impaired, occasionally genetically but more commonly because of past toxic exposure, and the individual may have more difficulty detoxifying. This can cause them to have reactions at dosage levels that would be less of a problem for healthy individuals with normal detoxification. It is important to recall that the vast majority of pharmaceutical agents are derived from petrochemicals and must be detoxified by the body using the detoxification system. Therefore, an individual who has impaired detoxification may have more difficulty tolerating medications ..."
http://www.mcsbeaconofhope.com/drziemalrg.html

 

    Dec. 14 -- 3.0 . . . A tiny improvement but that improves my outlook a lot! A whole lot!!